Testosterone

[Blair77]

Also, the doctor had been treating my husbands low libido and ED with 60mg testosterone gel for the past year. I wonder how much of that treatment has contributed to the degree at which he's been diagnosed at stage iv. Oh how I wish they would have checked his PSA a year ago.

[JoelT]

Blair,

I can certainly understand your frustration in the situation. However, there's nothing that you can do to change the situation. Please, do not think that I am belittling the frustration that you are feeling (and that you have every right to feel), but the two of you now need to concentrate on his treatment, not your anger.

Joel

[Blair77 in reply to JoelT]

True, just frustrating!

[PeterArtiste in reply to Blair77]

You know what? After almost 18 years battling this thing it's good to get your anger out, it's part of the healing process and it is not good to postpone something this important that you have emotions about. After all, it's easier to get on with healing after you get some of that anger satisfied. Whack the bat or frying pan on a pillow. Draw the face of that doctor on the pillow and whack it a few times. Take your belt buckle to it. Or if you are so inclined, go to a firing range and shoot some guns. Lower budget is to use a dart board in a bar or a saloon, or at home with your favorite libation. Love & hugs to you both, scream until you laugh. God Bless, you are not alone.

[Cynthgob in reply to PeterArtiste]

My husband was neglected by his dr as well. I did go onto his site and put a very bad review in. It made me feel better and I also want other patients to know that he doesn’t believe in doing psa tests.

[sdnb in reply to Blair77]

Hi Blair, I won't even take the time nor the effort to share what idiot was my husband's primary care physician, and did not review his increasing PSA until it was too late . . . stage 4, mets . His PSA rose within eleven months from 2.0 to 3.5, which I feel is very significant, but to this doctor who repeated "But it's still under 4." that was the death sentence. I can understand, and I feel your frustration and anger! It's been two and a half years since my husband passed away, after a five year battle with prostate cancer. The gentlemen who have participated on this website are, I am quite sure, sick of my moaning about the situation in which my husband's life was shortened much too early due to the doctor's neglect and his total lack of knowledge on prostate cancer, actually it was his physician's assistant which makes it that much more difficult to accept because the doctor failed to check his P.A. results and diagnosis, then neither of them "thought" of referring my husband to a urologist. Oh, Blair, you are way too calm for this to have happened to your husband. If time had not crept past us, I was prepared to file a medical malpractice suit against the doctor. There are so, so many more factors in our story, but for the sake of the gentlemen who patiently have let me air out my rage more than once on this website, I will end here and wish you and your husband the absolute very best of care and treatment in the future. God Bless You.

[sdnb in reply to JoelT]

But JoelT, If only one man or wife reads about some of the malpractices that occur from one doctor to another, who knows but what it might cause somebody to think about further information. If I had read anything that even slightly resembled my husband's story, you better believe I would have looked into it, changed doctors, reported him to a medical board, etc. whatever it took to have him held accountable. All we got from him after he learned of stage 4 cancer in my husband, was a smug half smile and a "I don't owe either of you an apology... I did nothing wrong."

[Hidden]

Low T -- even if it's within the normal range -- teaches our PC cells to become castrate resistant, accelerating our path to hormone treatment/ADT failure. Mine, for example, has long been around 380 (on this scale, normal ranges from 300-800). That probably means my benefit from ADT will be on the short side of average, as my PC cells are likely well on their way towards figuring out how to live without T. But as Joel said much more elegantly, that ship has sailed, and we must move on.

Trite? Easy for me to say? Believe me, I've been there, done that, too. My VA doctor ignored my rapidly climbing PSA for three years as it jumped from 2 to 4 to 6 to 9 before he finally mumbled something about seeing a real doctor 12.5 years ago. Three oncologists have told me he signed my death warrant by letting my PC escape my prostate. Life span projections now say he cut about 26 years off my life, most of them very vigorous.

I learned three lessons from that that -- strongly reinforced dozens of times since then -- have helped me beyond measure to this day:

1. Do not trust doctors blindly. Study your conditions in advance, learn enough to spot the idiots, and fire them (switch doctors) when necessary.

2. Take that study another step: learn enough to question their treatment plans and counter-propose your own course of action if you disagree with theirs. (A good oncologist insists on patient involvement, because they know this disease and its victims' personal priorities do not fit a cookbook.) I've done that several times with my teaching hospital/national cancer center/urological oncology dept head/research icon and the hospital tumor board, with not only their blessing but their complements on my insights and praise for my involvement. When at last they and I completely disagreed at a vital point in my disease's progression, they were proved wrong on three technical levels by multiple peers and hundreds of peer-reviewed publications -- including some bearing their own names. And I'm just a long-retired U.S. Air Force engineer with no medical background.

You've begun the process by inquiring here. Keep it up.

3. Do not trust the VA at all. Period. My own personal horror stories there would fill -- actually, HAVE filled -- pages, some of their own doctors agree with me, yet formal written complaints from me and M.D. whistleblowers have achieved absolutely nothing ... (unless our recent election is an indicator.)

[Hidden in reply to Hidden]

Sorry to hear about your experience with a lousy doctor who dropped the ball. I had to nag my new doctor for a DRE. I expected that on the first visit but only got it on the third visit after I continued to nag. I guess patients aren't the only ones who aren't wild about DRE's. Mine saved my bacon (I hope), as my PSA was a modest 2.7. The inaction caused my cancer to be diagnosed 3 months later than it could have been. The earlier the better when it comes to PCa so I hope I don't have to pay the price like you did.

[Hidden in reply to Hidden]

Given that PC "gestates" for decades, I can't imagine 3 months' discovery delay being very significant to our calendar even though it does rush our bucket list.

[Hidden in reply to Hidden]

Yes, but ... my DRE a year earlier produced no finding. This DRE turned up a very palpable tumor. Gleason 8 and apparently fast growing since there was no sign of it a year earlier.

[900312611 in reply to Hidden]

Hello:

Just read your post, even thought a year old, could you please show me a reference to: Low T -- even if it's within the normal range -- teaches our PC cells to become castrate resistant, accelerating our path to hormone treatment/ADT failure.

Thank You

[sdnb in reply to Hidden]

Oh, my God, that doctor must have been an identical twin to my husband's doctor! I am in tears reading your story, Hidden. It follows so closely that of my husband's. And I used a similar phrase "a death sentence" to your "death warrant" . Although I knew my husband's life was cut much shorter by the errors of the primary care physician, to learn from you that it possibly shortened his life by 26 years is devastating. I am so truly sorry that this situation occurred. I thank you for validating my feelings (although you have nowhere near the rage that I still have). Knowing someone else, and who knows how many others, experienced the travesty my husband did, doesn't bring him back, but I know I'm not crazy for figuring our the doctor was C.H.A. by not apologizing. Even he wasn't THAT stupid! Feel free to share any more of your story directly with me if you care to do so . . . . [e-mail]

Thank you, thank you.

[gusgold]

380 is a within a normal range and will not shorten effectiveness of ADT

[Hidden in reply to gusgold]

Leibowitz/Eshaghian of Compassionate Oncology very publicly and emphatically disagree. I've not checked their references on that claim because it won't affect my decisions, but it's part of their whole treatment foundation and IIRC they even lay out the microbiological logic.

[Shepard]

Interesting! I had the same experience with the VA "monitoring" my PSA (and doing so with documentation of my exposure to Agent Orange in Vietnam.) Concern over rate of PSA increases drove me to private treatment: surgery revealed now Stage 3, IMRT 43 sessions because PSA quickly rose and then continued to rise, so now on Lupron. Zero T after a year on Bicalutamide and feeling extreme fatigue so took a break for nine months. PSA now 1.37 so back on Bicalutamide. I exercise everyday in addition to farm work, but must take care as have significant bone loss (high risk breakage in 3 of 5 measurements.) So far no mets identified. Doctor says I am a candidate for immunological treatment, but not at the moment. I am five years with the disease and vertical so feel blessed. My cancer will remain aggressive and so must I. I feel losses from previous life, but much remains. I give myself rewards for daily achievements. I have a shelf full of and intend to build some more shelves. Blessings to us all.

[Hidden]

After seven years with this thing, I would think that a competent physician would do some sort of testing before prescribing T Gel. Also, seven years ago, I wouldn't have known any better either. After your post, I realized I no longer see TV ads for T Gel, how about that.

Today, my T is 0%. It's not fun, but I got used to it. You will too. Prepare yourselves for a journey, keep a positive attitude from here on out, and live life as best you can now.

Peace Joe

[Hidden in reply to Hidden]

I have a T cream story. At age 65 I was feeling fatigue and asked about T supplementation. I remember his parting words: "if you are prone to developing prostate cancer, this will be like throwing gasoline on a fire." I used the cream for exactly 1 1/2 months. When I didn't see any significant reduction in my fatigue, or any other dramatic benefits, I stopped taking it. A year later I was diagnosed with prostate cancer. I did have my PSA checked (2.9) and a DRE before that prescription. Coincidence, or did that T cream really fire things up over such a short time?

[Hidden in reply to Hidden]

Ed, That sucks, BAADDD!

After people learn that I have no T, and what a man goes through while on it, they always freely offer their advice. Everything that said Testosterone was in it, was suggested. They just couldn't grasp the situation. At a weak point a couple years ago, I tried Physical Therapy. After a few weeks, I found out they were making fun of me. They couldn't understand either, or they were plain old ignorant.

Joe